My primary doctor referred me to a local urology group due to an elevated PSA of 4.3. A 14 core biopsy was performed showing PC in 3 cores (2 <5% & 1 <10%). All with a Gleason 6. Stage T1c.
Following my biopsy results the urologist stated "We caught it early. You have time to decide on treatment.", but within 30 seconds he was trying to have me set-up appointments with their cancer treatment group for either radiation or surgery. He said that Active Surveillance (AS) was not recommended, as they follow NCCN guidelines - which is not true!
My wife and I were both in shock and needed time to regroup. We were uncomfortable with immediately committing to a treatment. We went home and started our research. We took time to read this wonderful site, reviewed the NCCN guidelines, went to many PC sites on line, and talked to everyone we could that had experience with PC. We decided to seek out as much info. on my specific PC, first, before deciding my treatment plan. This included the following:
1. Made an appt. at a local cancer research institute. Met with 2 doctors who reviewed my previous biopsy slides. Both doctors felt that AS would be OK, but the urology staff, as a group, felt the best treatment was surgery as they also follow NCCN guidelines.
2. My wife, who is an RN and researched extensively (I'm so lucky!), felt I should have an MRI done to better evaluate the extent of my PC. No doctors at this point had recommended an MRI.
3. Decided to seek a third opinion based on advice from a family friend who worked for a well-known urologist. He is the chairman of the urology department at a local university medical center. We were immediately impressed on how thorough and knowledgeable he was. He recommended I have an MRI with a follow-up fusion biopsy 3 months after my last biopsy.
4. Prior to the MRI I had a repeat PSA (4.8) and a Testosterone Level (normal).
5. MRI revealed a hotspot. 12 core fusion biopsy performed in hospital the next day. Results showed 2 positive cores (<5%), each Gleason 6. The hotspot was also biopsied and revealed 2 of 3 cores positive (<5%), each Gleason 6.
We followed-up with the urologist who suggested we speak with one of their top surgeons for his opinion, as well. However, my urologist supported AS as a viable option.
We met with the surgeon to discuss the pros and cons of surgery. To our pleasant surprise, he recommended additional testing be done to determine if my PC is aggressive or slow growing. This is a new genetic test that many hospitals and doctors are now starting to use. The test is called Oncotype DX by Genomic Health. (Great article in the Wall Street Journal on May 10, 2016. I can give anyone a copy if they need it.)
I had very positive results which downgraded my PC from low risk to VERY low risk. This test confirmed my decision that AS was the best option for me.
Since this test (March 29, 2016), I had a repeat PSA in June -3.9
My doctor has recommended PSAs & DREs at 6 month intervals, and repeat MRIs (possible biopsy) every 18-24 months if nothing before that changes.
As this site says, do your homework, study and research, because every man's PC is unique. Don't make quick decisions on treatment if you have time. Finding a doctor you feel comfortable with is critical.
PSA checked on September 6, 2016 is 3.8. Follow up with my urologist who performed DRE and checkup. Supporting my decision for AS and recommended PSA and exam in 6 months. Feeling blessed.
PSA was checked on March 6, 2017-3.8. Phone call from NP from my Urologists office who said "no need to come in, follow up PSA in 3 months." Living near Buffalo, NY fortunate to have many great doctors and medical facilities.
Last PSA was 2.8 on May 26, 2017. Urologist appointment on June 3, negative DRE, ok with continued AS. Recommended follow-up MRI and PSA in 6 months. If no changes in MRI, repeat biopsy in a year. Moving to Southwest Florida the end of June. My urologist gave me a recommendation for an excellent urologist to continue my treatment.
Last summer my wife and I moved to Florida. I found a new urologist in Sarasota. (We've both been very pleased with all of the doctors and medical facilities in the Sarasota area, so far.) My new urologist supported my decision of AS, and we continued with my prior monitoring schedule. Here are my latest results.
11/14/17: PSA-3.1, DRE-neg.
12/8/17: Follow-up MRI-"Essentially the same" as the first one.
4/10/18: PSA-3.77
Though all was looking good, my urologist wanted to do a repeat biopsy, due to it being 2 years since my last one. (My 3rd-Ugh!) I really wasn't wanting to go through another one, but I trusted him (which is very important!) and decided it was necessary in order to get the best look at what my PC was doing. HE WAS RIGHT!!!
4/17/18: 12 core biopsy-6 positive, all Gleason 7 (3+4), each with volume 10%-30%
Due to these new findings, and because the MRI confirmed that the PC remains encapsulated in the prostate with no apparent signs of spread (so far), my urologist recommended that I begin treatment. He stated I still have the best chance of being cancer-free if I act now. My wife and I took a step back (as we like to do) and researched multiple treatment options.
We decided that surgery is my best choice given my age, my projected life expectancy, and the stage of my PC. We met with an excellent surgeon from the same urology group as my urologist.
As always, please do your homework, especially when it comes to picking a surgeon and a medical facility.
We chose a surgeon with an impressive resume, but more importantly, he has experience and excellent post-op outcomes. He does over 150 RALPs (Robotic-assisted Laparoscopic prostatectomy) per year and has been doing them for 9 years. The hospital this surgeon is affiliated with also does a high volume of surgeries and is top-rated. Our research revealed that these are the two most important factors that will directly effect your post-op results. In addition, when we met this surgeon he was professional, caring, and took time to thoroughly answer all of our questions.
My RALP is scheduled for June 5, 2018.
Since last post, had surgery at local hospital. Margins showed no cancer ouside of prostate, cancer free! 3 months out using pads daily just for stress incontinence. Following my doctors advice on daily Kegel exercises. ED issues resolving slowly but I remain optimistic. I feel I made the right decision picking RALP vs. the many other treatment choices.
Three follow-up PSA tests, all 0. Very slight leaking occasionally (stress incontinence) not wearing any pads. ED still an issue, tried Viagra and Cialis but side effects were terrible. My Doctor says it can take up to 2 years to achieve an adequate erection for intercourse. Remaining optimistic and grateful.
Two follow-up PSA tests all 0 ! Now testing only annually. Still expierencing some minimal leakage when very tired, straining or after alcohol use. Got to more consistent on daily kegels per my doctor. ED still an issue fo an adequate erection for intercourse. Still able to have an orgasm with a partial erection. Next step may be to explore other options such as MUSE or other injectables. Eternally grateful to be cancer free.
Still dealing with some leakage, especially if I drink caffeine late in the day. Ed still an issue, tried all the pills avaiable with minimal success (hate the side effects). Not sure if/when I may persue other ED solutions. Feel blessed every day to be cancer free.
Not much has changed for me. However, I have noticed my leaking is a lot less when I avoid drinking too much alcohol (especially beer). I was reminded again recently by my Urologist that I should do daily kegels (need to work on that ) to help with my leaking. I continue to be extremely grateful.
Not much has changed since last update. Still eternally grateful to be cancer free and for chosing my treatment option.
Dan's e-mail address is: dburky2003 AT yahoo.com (replace "AT" with "@")
